Fibromyalgia syndrome (FMS) is characterised by chronic widespread pain, tender
points and fatigue. A clear biological explanation of FIVIS is lacking, and there is
debate regarding the 'legitimacy' of the condition. Often, therefore, people with
FIVIS do not obtain a straightforward, clear diagnosis - or any diagnosis at all. This
research sought to explore the diagnostic and subsequent experience of people
with FIVIS.
Semi-structured interviews were conducted with 17 people formally diagnosed with
FIVIS. Interviews were tape-recorded, transcribed, and analysed by the inductionabduction
method. Findings were triangulated through documentary analysis of lay
literature on FMS.
Participants referred to their symptoms within a dualistic framework, with
symptoms seen as an aggressive force that invades the body. Individuals had high
expectations of the medical profession. They expected tests to be done, with a
diagnosis and prognosis to follow. The diagnostic process was often reported as
complex, ambiguous, and ambivalent. Although individuals were initially relieved
following the diagnosis, this was often replaced by shock and uncertainty, as no
one appeared to know what FIVIS is, what caused it or how to treat it.
Consequently, informants had actively to search for a meaning of FMS through lay
networks and literature. Several chose to reject the diagnosis, as it did not
represent their own understanding and experience of their symptoms.The meaning attached to FIVISin fluenced participants' coping strategies. They had
difficulty finding adequate social support, and while significant others assumed this
role, the informants felt uncomfortable. Many expected the medical profession
should provide social support, but this was not always forthcoming.
People diagnosed with FIVIS expect their illness to be satisfactorily understood and
explained by the medical profession. Tensions exist between this expectation and
their actual experience.